Questionnaire about patient expectations

Questionnaire about patient expectations.
Development of a questionnaire on patients’ expectations in alpha1-antitrypsin deficiency (AATD)
Developed by: L. Fregonese

Pulmonology, Leiden University Medical Centre, Netherlands

Background
Patients seeking help for symptoms usually worry about the causes of their symptoms: they have specific expectations for care, need for information, they request time and services.
Reasons why it is important to measure patients’ expectations are qualitative: fulfilling patients’ needs is an inherent goal of medicine, and quantitative: learning about patients’ expectations helps to identify areas for improvement in health care provision and produces greater satisfaction with care, better adherence to medical advice and better use of the available resources.

Current methodology
Tools to evaluate patients’ expectations and satisfaction have been developed in the past twenty years, so we can conclude that nowadays patients’ expectations are measurable; and conclusions can be drawn from these measurements which have potentially important clinical consequences.
Most used tools are questionnaires and surveys, or direct interviews. There is no clear advantage of one method over the others, since each method has its own biases, thus all methods are allowed in the literature and might be used according to the situation and the logistic needs.

A specific questionnaire for patients affected by AATD
It is intuitive that there might be different needs and expectations in patients with different diseases, depending on: the severity of the disease, the average age of onset of the disease, the availability of treatments, just to mention a few.
Most of the questionnaires/surveys published in the literature investigate what patients expect from the primary care system; only a few questionnaires address expectations from specialist care or explore whether expectations differ between primary and specialist care.
Patients affected by AATD are at high risk of developing lung emphysema at young age. Besides the need to address their expectations as people affected by a progressive, invalidating lung disease, AATD patients might have additional expectations caused by the status of AATD as a rare disease (a disease with a prevalence equal or less than 5 in 10000). People affected by rare diseases have specific needs, resulting from the difficulty in getting the correct diagnosis (with often diagnosis delay and lost of trust in the healthcare system), the scarce availability of treatments, the social isolation.
We decided to develop a specific questionnaire to address needs and expectations of AATD patients. We chose a questionnaire as a method because we aim at reaching a large number of people, through mailing and the web.

The questionnaire is composed of 4 different areas that will be addressed through several specific questions.AREA 1: Demographic
AREA 2: Experience
AREA 3: Information
AREA 5: Expectations

Alpha-1 Antitrypsin Deficiency – Lung Experience and Expectations Questionnaire
AATD-LEEQNote: the questionnaire is completely anonymous and in no way the names and/or any way of identification of the respondents will be made possible or used for any other purpose than statistical assessment.

Year of Birth is 19 _ _:

1920-1929

1930-1939

1940-1949

1950-1959

1960-1969

1970-1979

1980-1989

1990-1999

2000-2009

2010-2019

Your Gender is:

Male

Female

Smoking status:

Never Smoked

Former Smoker

Current Smoker

When did you notice the first symptoms of your disease?
On age:

0-5

6-10

11-15

16-20

21-25

26-30

31-35

36-40

41-45

46-50

51-55

56-60

61-65

66-70

71-75

76-80

81-85

86-90

91-95

96-100

101-......

Who first told you that you could be affected by AATD?

General practitioner

Pulmonologist

Pulmonologist with specific expertise in my disease

Internist

Family or friends

None of the above (please specify)

At what age did you get the confirmation that your disease was AATD?
Your age in years

0-5

6-10

11-15

16-20

20-25

26-30

31-35

36-40

41-45

46-50

51-55

56-60

61-65

66-70

71-75

76-80

81-85

86-90

91-95

96-100

101-...

How many doctors did you consult before having a correct diagnosis?

1

2

3

4

5

6

7

8

9

10 or more

Who follows you regularly for your disease?

General practitioner

Pulmonologist

Pulmonologist with specific expertise in my disease (Person or Centre of reference)

Internist

Family/friends

Nobody

Non of the above (Please specify)

Are you under treatment for your disease?

Yes

No

If you answered YES to question 6, do you think that the treatment that you are receiving for your disease is: ( Optional )

Not appropriate

Appropriate

The best available but not sufficient to stop/cure my disease

How did your disease affect your job/education?

i had to quit my job

i had to change job

i had to reduce the number of hours that i can work

my job is not affected with my disease

Did you feel discriminated because of your disease

Yes

No

I do not know

Do you know the name of you lung disease?

Yes

No

Maybe

Did you have explanations about the way your disease affects your lungs, the risks, what will happen in the future?

Yes

No

I do not know

If you select YES on the previous question, select one ( Optional )

General practitioner

Pulmonologist

Pulmonologist with specifice expertise in my disease (person or centre of reference)

Internist

Family/Friends

Nobody

None of the above, (Please specify)

Did you find the explanations sufficient?

Yes

No

Did you get recommendation to quit smoking? ( Optional )

Yes

No

If you selected yes in the previous quistion, who recommended you to quit? ( Optional )

General Practioner

Pulmonologist

Pulmonologist with specific expertise in my disease (person or centre of reference)

Internist

Nurse / Physiotherapist

Family/Friends

None of the above (please specify)

Did you quit smoking after the diagnosis of AATD? ( Optional )

Yes

No

Did you get recommendations about your diet or eating?

Yes

No

Where you ever asked to participate in a clinical trial to test a new treatment?

Yes

No

Where do you find the latest information about what's going on for your disease? (new treatments, ongoing clinical trials, new research)

General Practitioner

Pulmonologist

Pulmonologist with specifice expertise in my disease (Person or centre of reference)

Patients association

Internet

Family/Friends

None of the above (please specify)

What do you think what will happen to your disease in the coming years, with the currently available treatments?

Will get worse

Will stay the same

Will improve

I have no idea

What do you think your general practitioner should know about your disease?

Be able to recognize that i have AATD

Be able to recognize that my condition is somewhat "different" and refer me to a spcialist

None of the two

Who do you think should take care of monitoring the progression of your disease?

General Practitioner

Pulmonologist

Pulmonologist with specific expertise in my disease (person or centre of reference)

Internist

Nobody

None of the above, please specify

Who do you think should decide about giving you a new treatment?

General Practitioner

Pulmonologist

Pulmonologist with specific expertise in my disease (person or centre of reference)

Internist

Do you think that new effective treatments will be developed in the coming years to cure your disease?

Yes

No

I don't know

To be able to discuss with you doctor your own idea's about how to manage your disease for you?

Necessary

Important

Not necessary

I would like my doctor (general practitioner/specialist) to spend more time than he/she usually does on:

Explaining about the progression on my disease

Explaining about what i should do with eating habits and physical exercise